Professional grandmother

Dear Mrs. Sander,

I am the grandmother of a delicious little girl who has Down syndrome. She was born a few days after my mother died and is the first one to have my mother’s name (now, three years later, there are a bunch of Chaya Sorahs). Chaya’s mother, my daughter, introduced me to DSAU.

I am also a retired speech pathologist, having worked for the Baltimore City Public School system. During those 30 years, I spent almost five years supervising the SLPs (speech-language pathologists) in over 30 schools, including the school in the part of Baltimore where most frum families live. That school is the zoned school for close to 2000 students who don’t go there! Five jam-packed Jewish schools serve our children so now there is a team dedicated to serving the needs of the frum kids, which meets at the public school. Although speech therapy does go to the schools, all assessments and IEP meetings are held at the public school. (I hasten to say that the team respects our children and our schools and have even learned how to pronounce our Hebrew names.) So, I have probably attended hundreds of IEP meetings, which brings me to the purpose of this letter.

In one of your past issues you had several articles about mothers’ participation in IEP meetings, which mentioned some very important points. I would like to add some more pointers.

Father’s could/should attend the meetings at least some of the time. First of all, fathers have many important insights to add; they are also involved, I hope, in all aspects of raising their child. Secondly, if the father does not attend any meetings, he loses out. He does not have all the information he needs to have about his own child.

An IEP meeting is not an adversarial procedure. Everyone at the meeting is there for the good of the child. Often, we come to a meeting ready to fight for what we want. And, then, the team listens to all the reports and hears from all the therapists, teachers and family, and suggests exactly what we wanted! everyone at the table is on the child’s side. My daughter wanted Chaya to go to the Gan that her other daughter had attended. For that, she wanted a full-time aide. Mindy came well prepared. She brought me, the family expert (from Baltimore to Philadelphia), and the administrator of the Gan. The schedule at the Gan was as follows: Activities: 9 - 12, Lunch: 12 – 1, Rest: 1 – 1:30, Dismissal: 3:00. Reports were read and there was input from the special educator and the OT. With no argument at all, Chaya will have an aide from 9:00 to 1:00 and therapy every afternoon from 1:30 – 3:00 and one hour a month of consultative services from each discipline. In addition, as long as she passes a background check, the family can choose the aide (who will be the babysitter who has cared for Chaya since birth).

More is not necessarily better. FAPE means an appropriate education, not admission to Harvard (or Ponevich). The school system is mandated to give the student the means to access the information being presented by the teacher. That’s it. The school system is not required to bring your child up to the standards of the honor roll. Parents (and grandparents) need to be realistic about the demands they put on their children. We must help our children reach their potential but we should not try to force them beyond what they can do.

And last, but by no means least, parents must not forget to say ‘please’ and ‘thank you’. Even though we have entitlements and even though IEP meetings and evaluations are part of the teams’ job descriptions, it’s nice to hear that your efforts are appreciated.

This letter turned out much longer than I expected it to, but I hope you find my remarks of value.

May Hashem grant you the stamina to keep all your balls in the air.

Leah Lando

This article first appeared in issue #14 of Down Syndrome Amongst Us

Click here to see more articles in the Grandparents section
Click here to see the other articles in issue #14 of Down Syndrome Amongst Us